I never thought I would be that mom.
Sobbing over a rejection letter.
Ever since my daughter’s diagnosis at 11 months of age, people have blithely reassured me that she will “outgrow” it and be “fine.” Easy for them to say. They’re not the ones who need to explain to a 3-year-old why no school will accept her.
Apparently I need an alternate universe to raise my daughter in. One where food isn’t the primary focus in every venue for children.
Huvi has a hyperallergic disorder that makes her allergic to most foods, including many foods when they are hot or being cooked. Even from a few rooms away. When asked to list her allergies, instead we give the very short list of under 15 foods that she can eat. Strong smells and chemicals are a problem for her as well. Like things regular people use to clean or wash their clothes. We basically keep her in a bubble.
Yet, she wants friends. She wants a backpack and a lunchbox and a school bus like the neighbors. She’s super smart and scored amazingly high in math and reading related testing. She really wants to be part of a class and learn with a teacher in a classroom.
And I’m stuck, yet again, explaining why she can’t do all the ordinary things most kids her age can do. It sucks. The one thing I would do anything to give her is completely out of my control.
Her birth went perfectly, but from day one things were complicated. The first time I nursed her, she was inconsolable after eating—vomiting, arching her back, and screaming no matter what we did. At my 6-week check up, every other baby slept peacefully in their snap ‘n go carseats. Huvi screamed, no matter what we offered her.
During that week we saw a lactation consultant, a feeding therapist, and a pediatrician who started her on Zantac. I removed dairy and soy from my diet. Her eczema improved a little, but she still screamed most of the time and vomited after every feeding.
By 12 weeks we were seen by a GI who systematically worked with me to remove foods from my diet until we found the offending culprits. We continued removing foods until we were down to turkey, sweet potatoes, and coconut milk. She reacted badly to every medication we tried. The GI was convinced it was allergies, but we saw two allergists and all her testing was negative.
By 7 months she stopped gaining weight no matter how much I nursed and by 11 months she was seriously FTT. We scheduled outpatient feeding tube placement. At the last minute, the GI decided we should admit her the night before and run an IV overnight so she wouldn’t dehydrate before the surgery.
I couldn’t imagine how she would do in the hospital, and no one understood when I kept saying she reacts to “everything.”
We admitted her and hoped for the best. I got a fridge in the hospital and brought along my turkey and sweet potatoes and coconut milk.
Shortly after starting the IV, they switched to D5W (dextrose) so she wouldn’t dehydrate. She immediately went into anaphylaxis and they had to stop the IV and cancel the surgery. The doctors had no idea what was wrong with her, but it was clear it was way more than just reflux, and surgery wasn’t a safe option until they knew what was wrong.
Our doctor canceled his work for the day and spent his time calling other doctors until he found an allergist/immunologist who recognized this phenomenon and agreed to see us.
And then it came, the diagnosis: mast cell activation syndrome—where the body reacts to everyday things as if they are an allergen. Including most foods, preservatives, chemicals, heat, cold, flowers, strong emotions, viruses…
When Huvi had a bad reaction at the allergist’s office at her first appointment, the doctor pointed out that she was reacting to the pizza her staff was eating—three rooms away! She had them take it outside and her symptoms immediately lessened. That was consistent with her reaction the week before when I made baked ziti for my stepdaughter and Huvi ended up in the ER.
So no hot dairy. Got it.
Several more bad reactions proved she was just as allergic to eggs. And corn. She reacts to soaps and cleaners, too, even super organic ones, as they typically use some type of scent. This means that not only does she need super hypoallergenic soaps, but everyone else in the house does, too.
Food wise, she’s up to 13 tolerable foods—lamb, chicken, turkey (as long as they aren’t contaminated by beef or fed corn), unsweetened coconut milk, potatoes, sweet potatoes, carrots, rice, quinoa, onions, olive oil, salt, and sugar.
Most people think the food is the hardest part. Physically that may be so. Just about everything she eats is made from scratch with very few ingredients. Histamine (her enemy) grows in leftovers, so we have to make everything fresh, too. So it’s repetitive and I’m constantly cooking, plus trying to make her food look like everyone else’s. She has pancakes for breakfast with “syrup” (boiled sugar); she eats “meatballs and spaghetti” (ground turkey and rice spaghetti); and she loves her cholent (lamb and potatoes) and potato kugel (grated potatoes and onions). She’s never tasted the real things, so she’s happy.
And she has lots of toys. We make every holiday fun and special for her. We even did fried doughnuts for Hanukkah. (They were good as long as you ate them straight from the pan.) When she wanted a tea party, we found an adorable Ralph Lauren teapot (half price at Home Goods of course! We’re Jewish!) and now have tea parties with water and rice flour pancakes.
That’s all doable and not that different from any other kid.
The hardest part is the isolation. Every group activity we’ve tried has failed. We had to miss my brother’s wedding after she had a really bad reaction at his engagement party when a friend walked in covered in perfume. Most family get togethers include food, and that excludes us. We can’t shop in Target as they make popcorn there. We can’t walk into a bakery as they have eggs cooking there. Trains, planes, and taxis are full of allergens for her.
Her doctors keep praising me for keeping her in a nice, safe bubble, and for the most part, major reaction free. But I want so much more for her than just sitting at home, alone with her toys and books. And the sad truth is, I don’t know how to make that happen.